Dr. Joseph Brewer and Mycotoxins

I have had the Real Time Labs mycotoxin panel done and had high levels of Ochratoxins, Tricothecenes and was at the very top of the reference range in Aflatoxins. This blog post from Chris over at CFS Patient Advocate summed up an interesting study and outlined a possible new treatment direction for me to explore.

CFS Patient Advocate

Sunday, March 30, 2014

Dr. Joseph Brewer and Mycotoxins, an update

Dr. Joseph Brewer of Kansas City was one of the physicians who did not attend the recent IACFS/ME conference. Dr. Brewer is an infectious disease doctor who has been working with AIDS, Lyme and ME/CFS patients for a very long time. Over the years he has become interested in various treatments for ME/CFS – and has been open to thinking about associated subjects such as Mitochondrial impairment (or down regulation) or Mycotoxin involvement – to describe two of his recent interests.

About two years ago now, Dr. Brewer stumbled upon Mycotoxins and their potential involvement in ME/CFS. Dr. Brewer and his associates, Dr. Thrasher and Dr. Hooper, published their first paper on Mycotoxins and ME/CFS in April 2013. It can be view here. In this study, Dr. Brewer reveals finding 93% (104 of 112) of his patients positive for one of three mycotoxins (there are hundreds of mycotoxins) through a test at Real Time Labs in Carrollton TX. Zero of 50 controls tested positive.

The Real Time Labs test is a urine sample for Ochratoxin A, Aflatoxin and Trichothecenes (MT). (Real time labs will soon have a blood test for gliotoxin, a mycotoxin associated with Aspergillus.) The initial test costs about $700 and appears to be partially reimbursable. On Dr. Brewer’s initial study Ochratoxin A showed up the most, although a good number of patients had more than one and some had “the trifecta” – of all three. Dr. Brewer feels that mycotoxins are not good for patients to have in their bodies –  and that they represent a major factor in their ME/CFS illness.

Dr. Brewer reports that these mycotoxins impair mitochondria function and interfere with cell membranes. Loss of mitochondrial function can cause detoxification problems with other toxins. Poor detoxification might have something to do with clinical response.

Dr. Brewer’s previous experience with mold or mycotoxins was non-existent. He is an infectious disease doctor who looks for bugs and tries to kill them. In no way can Dr. Brewer be described as a “mold doctor”.

In December 2013, Dr. Brewer, Thrasher and Hooper published a second paper on Mycotoxins and their connection to chronic illness – “Chronic Illness Associated with Mold and Mycotoxins – Is Naso-Sinus Fungal Biofilm the culprit?” In this study they laid out their case based on examination of existing literature, citing case studies.

Faced with this high percentage of his patients with potential mycotoxin involvement, Dr. Brewer was both surprised and perplexed. He began treating some of his patients with heavy duty anti-fungal infusions. In time, again through researching the literature, Dr. Brewer concluded that the most likely reservoir for the mycotoxins was the sinuses. This involved a bit of guesswork. It is Dr. Brewer’s thesis that these mycotoxins get into the body and colonize in the sinus. Once colonized and protected by a biofilm, the body cannot get at them and they just stay there forever. It is his belief that they have to be rooted out. He finds in his patients that the exposure can be from the distant past, up to 20 years ago. From Dr. Brewer’s point of view, focusing on the sinuses in no way excludes other reservoirs harboring the mycotoxins – the gut, stomach and lung.

Dr. Brewer began treating his patients with nasal Ampho B – and he started getting results. Dr. Brewer works with a nasal drug delivery company called ASL pharmacy. They have a nasal delivery system called Nasa-touch which atomizes the medicinals. In time Dr. Brewer added another nasal drug to bust up biofilms that he believes are harboring the mycotoxins. This is nasal EDTA in combination with surfactant, an ingredient in Johnson’s Baby Shampoo.

Two side effects of this treatment are noted. One is that the Ampho B can cause nasal irritation and even mild nosebleeds in a few cases. The second is that the treatment often causes a strong herx reaction as the mycotoxins are exposed and the drug kills them. In both situations, Dr. Brewer moderates or cuts back the treatment and all cases have been manageable.

Dr. Brewer has been surprised, astonished really, by the results of treatment. In his first 100 patients treated, 70% showed improvement, including six whose symptoms completely resolved, including all symptoms of their larger illness.

With treatment, the successful patient’s urine Ochratoxin A will go down to zero in a matter of some months. The Trichothecenes (MT) takes longer but it too will diminish with treatment.

Three quarters of the patients treated had preexisitng sympotms of sinus problems. One quarter did not. Both segments showed equal improvement.

Dr Brewer has continued testing and treating more patients. He has now tested 350 patients, 325 of whom are positive for one or more mycotoxins. More Trichothecenes (MT) have been showing up recently in his patient population. He is now treating up to 200 patients and I believe another paper will be coming out soon. Dr. Brewer reports that those patients who have fully resolved and ended treatment tend to relapse and have to go back on treatment.

Dr. Brewer’s absence at the recent IACFS/ME meeting has already been noted. How could this happen? How could the emergence of a target for treatment not be acknowledged at this conference? This is all the more unusual in that Dr. Brewer published his first paper a year ago and then gave an exciting presentation at the Lyme conference in October 2013. In this situation, there seems to be a target, a treatment that is relatively benign – and Dr. Brewer is getting results. Doesn’t this warrant more attention? Wouldn’t it be interesting to find out what is happening here?

Of course, in spite of this, there was quite a lot of discussion of the subject of Mycoyoxins in the hallways of the IACFS/ME conference.

Regarding mycotoxins and ME/CFS we have to ask some questions. The most obvious one concerns the validity of the testing at Real Time labs. At the moment this seems the only lab that does mycotoxin testing. Dr. Ritchie Shoemaker has not been overly excited with this test, or with the idea of nasal colonized mycotoxins. If it isn’t mycotoxins that are being knocked out, what is the activity of Dr. Brewer’s treatment? A 70% response rate of over 100 patients is impressive. Dr. Brewer himself says that he has never seen such success with a single treatment.

Meanwhile other physicians are beginning to test their patients. A West Coast physicians group has tested over 100 ME/CFS patients for mycotoxins at Real Time labs – and are getting the same high positive results. Preliminary reports on Dr. Cheney’s testing of his patients also indicates a high positive response, especially for Trichothecenes. Even Dr. Ian Lipkin indicated that mycotoxins were dangerous, and warranted looking at in ME/CFS. Other physicians, Dr. Chia, and Dr. Enlander, are aware of Dr. Brewer’s work and have been encouraged to test their patients. 

DIETS Part II: compounded eliminations and low-histamine hell. I mean help. :)

It’s 8am and I’ve already been awake for 3 hours. I’m sick and unemployed, I should be sleeping ten hours a night. I should be sleeping late and luxuriating in the fact that I no longer have an alarm clock going off, a company to oversee, and bosses to answer to (… and bosses to whom to answer). My brain should be able to shut down and heal. It’s February, for fuck’s sake. Time to hibernate. I’ve been missing exciting life and getting absolutely nothing done for 17+ months now ~ why does my brain feel like it has to be on high alert ALL. THE. TIME?

Throughout the day, I’m a dizzy zombie, unable to accomplish anything, but my mind is weakly turning over like the Little Engine that Could trying to get up that hill: What do I need at the store? What could be causing my forehead rash? What will I eat for dinner? Will I try a sleep drug tonight? And then the night rolls around and that little engine reaches the top of the hill and starts to fly down the other side: HOW DO WE NOT END UP DESTITUTE? HOW CAN I MAKE MONEY? I NEED AN M.E. DOCTOR! WE NEED TO MOVE!

So, it feels like ~ and I think it’s the reality ~ I never deeply sleep and I never truly awaken. I am existing in a netherworld, a slightly off-center plane of existence where everything is blurry and too bright, where everything is too loud, but also muffled under ear-ringing… a place where you try to do something month after month, but, during the day, it’s too much energy and, at night, it’s too… sepulchral.

Case in point: I honestly thought it had been about one month since I wrote my diet post, but I see it has been more than three months. That’s a quarter of a year. Three months from now, I will be 41 and it’ll have been a year since I wrote “birthday present thank you cards” on my to-do list (they’re still on the list). Actually, three months from now it will be exactly 5/19 (in American date writing) and those closest to me know that that number means something (what, exactly, I don’t know. One day I’ll write a post about my weirdness with numbers).

raspberry pop tarts

raspberry pop tarts

Today, I woke up starving. It’s now 11:30am and I have already eaten a raspberry “pop tart” (click above image for recipe), some apple, a beef breakfast burger with acorn squash and coconut cream, and a mug of bone broth with sauteed kale, asparagus and parsley.

To continue the saga of how I got to this strange way of eating: When we last discussed food, I had just started a strict low-histamine diet. Before ME, my crazy heath history included idiopathic anaphylaxis, autoimmune urticaria and angioedema, flushing, vasovagal syncope/shock, and a slew of other things that could be caused by histamine intolerance and/or a mast cell disorder, such as medication reactions, dysmenorrhea, osteopenia, headaches, tinnitus etc. I thought if I were very strict with the diet, I’d be able to quickly tell whether or not it would make me feel better. I poured over online histamine lists for weeks. Information is very conflicting because histamine levels fluctuate based on where the food was grown, when it was harvested or slaughtered and how long it has been in storage. Also, if you listened to the interview with Dr. Joneja, you know that histamine is a very important neurotransmitter in your body, but it can build up over a period of time and, if your bucket is overflowing, you will have a reaction. In other words, the salmon with lemon on Monday may not do any harm and neither might the wine and chocolate on Tuesday, but the eggplant on Wednesday might just put you over the edge and you have flushing, a migraine, hives. Or worse, anaphylactic shock. It is a process of trial and error for everyone attempting this diet. You have to figure out what affects your body.

The two best histamine food lists I found were Dr. Joneja’s and this one out of Switzerland, which shows histamine liberators and DAO inhibitors (more on this later) as well as foods that are naturally high in histamines. If you are as insane as I am, you can look at the strictest list possible, which I compiled from the two linked lists as well as about five others. My list is so short because I wanted to know the foods that everyone agrees are probably safe.

I ate strictly low-histamine foods for about month and, let me tell you, it was far more difficult than all the other diet modifications put together. Even a loose attempt at low-histamine is a slice of hell. The dilemma in which I found myself was that I kept adding elimination on top of elimination. So, over the course of 20 months, I had eliminated gluten, tomatoes, eggs, and strawberries; then dairy, legumes, all grains but oats, nightshades, and most processed food; then soy, citrus, pork, red meat, lunch meat, shellfish, condiments, maple syrup, and honey. I added a few things back (rice, red meat, honey), but everything else stayed out. Once you adapt to certain meal staples, it is difficult to change ~ especially when someone else is shopping and cooking for you. And then, on top of these, I went low-histamine. I stopped eating most herbs and spices, spinach, avocados, sweet potato, chard, all vinegar, all fruit except apples and pears, all fermented foods, leftover foods, all fish, chicken… and red meat was out again. It was these last few that set me up for the fall. Having no leftovers in the fridge left me scrambling to find things to eat. I hadn’t figured out how to buy the freshest meat or the process of cooking and freezing to ensure I had meals on hand. I hadn’t figured out how to get enough protein when I wasn’t eating dairy, legumes and most meats. I decided not to give up nuts and seeds, which are avoided on the strictest histamine lists, because they were providing the vast majority of my protein. Still, they weren’t enough and my blood sugar started crashing daily, sometimes multiple times a day, sometimes in the 40s and 50s.

If anyone has experienced severe hypoglycemia, you know how scary it can be. Suddenly I didn’t care about any other symptoms, I just needed my sugar to stablise. Mainly veg does not work for my body. And so my husband became the Fresh Meat Scavenger and I became the Great Meat Eater.

To be continued (sooner than three months from now) with honourable mention to ketogenic, alkaline, low-salicylate, migraine, mold, AIP, and low-sulfur/thiol diets…

Allergies and all.

I wonder how much of how crappy I feel is from allergies. I wonder this all the time because I have never been able to accurately pinpoint my allergy “symptoms”. I don’t think I have any, but doctors continue to insist that I do. When I was a toddler, doctors did a whole slew of skin-prick tests and told my mother I was allergic to half the things on earth. I’ve seen the list: dogs, dust, insects, newspaper, hog hair (?!)… it goes on and on. Of course we ignored it and I don’t remember being plagued  by any allergy symptoms throughout my life (or maybe I was and it was “normal” to me, who knows?). Then, during a check-up about 5 years ago, a doctor told me I was “boggy” in my nasal cavities and said I should use Flonase to help with the symptoms, but I didn’t know anything different, so I never thought I had symptoms, so I never used the Flonase.

Then, after I fell ill with ME, I had some skin prick tests done again (searching, like so many of us do, for any answer to my problems). I was told I was allergic to dogs, cats, and dust mites. This time I took it marginally seriously and began the endless quest to kill dust mites (mattress, duvet and pillow covers, new allergy comforter, new latex pillow, wash bedding weekly in dust mite-killing detergent, HEPA air filter, UV and bright light, wet dust etc.) and started the lonely nights in bed without my pups to cuddle. Nothing about my symptoms changed. My ME/CFS symptoms, that is. Like I said, who even knows if I actually have symptoms to these supposed allergies at all? I don’t sneeze, I don’t itch ~ could my allergy symptoms simply be tiredness and a “bogginess” I never knew existed? “Yes,” the allergist said. “You will be able to breathe better and have so much more energy to play with your dogs, that you won’t mind not having them on the bed.” Never happened. Then I was tested for allergic reactions to trees, weeds, grasses, and molds.  I was allergic to all of it, especially alders and birch trees (see photos below).

birch tree reaction

birch tree reaction

alder tree reaction

alder tree reaction

Uh oh. There are birches all over our neighbourhood ~ we have one in our garden. There is an alder tree next door, looking over our yard. I looked up the current pollen count for our area: HIGH for trees, especially birch, alder and juniper.

Screenshot_2013-04-13-12-26-25What do I do with this information? I took a child dose of Zyrtec because I thought I should do something, but, as usual, I can’t really pinpoint symptoms. Yeah, my nose runs and my eyes feel … annoying… But, they don’t itch and I’m not sneezing and spluttering like those poor souls in the ads on tv. Should I be taking more antihistamines more often? Could it eventually help some of these allergic reactions I don’t even know I’m having? The doctor last year gave me Nasonex and oral steroids. They went in the drawer, unopened, of course. Maybe my allergic reaction would be more obvious if I went outside and rubbed my back up and down our birch, Baloo-style.

baloo - Edited

bare necessities

And I haven’t even started into the yes-you-have-food-allergies/no-don’t-trust-the-results arguments the doctors have when it comes to my positive blood antibody tests to tomatoes, cod and egg. I’ve always thought, if it’s not anaphylaxis, who cares? Unfortunately, with ME/CFS, it seems I HAVE TO care because reducing my body’s inflammation and stress hormones and toxins and oxidative stress and everything else that life throws at us is the only sure-fire way to feel better. Maybe Dr. Cheney was right when he joked that he’d like to be able to put patients in a coma to facilitate recovery ~ and, while he’s at it, how about we lie in a sterile bubble in a hermetically sealed room with no visitors, happy images fed into our subconscious, and nothing but anti-inflammatory glop in the feeding tube?

I’d rather curl up with my dogs (and the hogs) in the dirt and grass of the garden, under the shade of the alder, with a cold Mac & Jacks, and eat an omelet with some pico de gallo … and a cod and chips… with mayo and ketchup… fried in something other than coconut or olive oil… and live life. Allergies and all.

The Next Installment in Bad Food Experiences

Some of you might recall my experience with earwigs inside a peach and mold inside an apple and the bloody, black soul I found inside a banana… My saga continues with the manky, moldy, mildewed, malodorous COCONUT. Yes, those are colonies of mold growing in the shell and on the flesh, which is meant to be white. And, yes, it smells bad ~ my husband wouldn’t let it stay in the house.

coconut

I also want to mention that there is something wrong with some organic foods. Three times I have bought organic avocados which look great on the outside, but are weirdly stringy and discoloured on the inside. And, worse, they are tasteless! I’ve never experienced a “watery”-tasting avocado until I started buying them in the organic store. Also, bananas. I won’t buy organic ones anymore because they are strange inside. Their molecules are different; they don’t hold together the same way  ~ they separate length-wise when you are just trying to peel them. And they brown strangely. We have bought green organic bananas and, a few days later, they are still mostly green but practically liquid inside. Ew. I don’t get it. Is it because our food is so processed and chemicalized that I don’t even recognize the real thing anymore? And why are Red Delicious apples mealy, Granny Smiths give me a stomach ache, Mackintoshes are gorgeous to look at, but have no flavour, and Fujis are consistently crisp, sweat and tart? And where did all the gnarly crab apples go? And cooking apples? Did you know, when I was a kid in Ireland, we got apples, tangerines and nuts in our trick-or-treat bags?

Apple bad3

CookingApples

perfect apple

 

 

 

 

 

 

 

Maybe the business of “organic” and the labeling laws are a bit of a scam… Maybe the bigger issue is loss of diversification in our crops (remember the famine?) and consumers’ changing ideals of what our foods should look like and… Monsanto. I kind of want to launch into a huge diatribe about losing our fruit and vegetable varieties and the importance of seed preservation and how necessary it is for us to spend our money on the unknown, under-appreciated, ugly foods and not be sucked in by the pretty, homogeneous GMO products… But, I’ll spare you.

I’m grateful for vegetable gardens. Assuming we can have access to heirloom seeds. And climate change doesn’t destroy everything. 🙂